My brother is autistic | Royan Lee | TEDxKitchenerED
Summary
TLDRThe speaker recounts his journey with his autistic brother and their family dog, Muffin, highlighting the challenges and joys of living with neurodiversity. He discusses societal perceptions of 'normalcy' and the importance of embracing differences. Through personal growth and advocating for his brother, he discovers the strength in being 'weird' and the value of neurodiversity in shaping our world.
Takeaways
- 🐕 The speaker's childhood desire for a dog led to the adoption of a mischievous pet named Muffin.
- 👨👩👦👦 The family struggled with the care of their pet and their autistic brother, highlighting the challenges of raising a child with special needs.
- 🌐 The parents' immigrant background and the societal stigma around disabilities added to the family's difficulties.
- 🏃♂️ Muffin the dog played a crucial role in keeping the brother safe by chasing after him when he ran away.
- 🌟 The speaker's journey of self-discovery through travel and work abroad led to personal growth and a new perspective on life.
- 👨👧 The birth of the speaker's daughter and the challenges of parenthood added another layer of complexity to his life experiences.
- 📚 The pursuit of academic scholarship and critical pedagogy provided the speaker with tools to better understand and support his brother.
- 🤝 The return to Toronto to support his family was marked by difficulties and the realization of the systemic inadequacies in disability support.
- 💪 The speaker learned the importance of perseverance and advocacy when seeking support for his brother's needs.
- 🧠 Embracing neurodiversity and recognizing the unique strengths in individuals with special needs can lead to a more inclusive and equitable society.
- 🌱 The speaker's brother taught him valuable lessons about kindness, determination, and the importance of genuine communication.
Q & A
What was the narrator's childhood dream?
-The narrator's childhood dream was to have a pet dog, specifically an intellectual canine like Snoopy from the Peanuts comic books.
How did the narrator's family acquire the dog, Muffin?
-The family got Muffin from PJ's pet store in the mall after the narrator's persistent requests and tantrums.
What were some of Muffin's undesirable behaviors?
-Muffin would bite people on a whim, yap incessantly, and treat their home as her personal toilet.
How did Muffin help the family with the narrator's brother?
-Muffin was instrumental in helping the family by chasing after the narrator's brother whenever he ran away, effectively bringing him back home.
What challenges did the narrator's brother face?
-The narrator's brother was diagnosed with pervasive developmental disorder and later as autistic. He faced difficulties in social interaction and communication.
What was the narrator's initial reaction to his brother's condition?
-Initially, the narrator felt burdened by his brother's condition and wished for him to be 'normal'.
How did the narrator's perspective on his brother change over time?
-Over time, the narrator's perspective changed as he began to appreciate his brother's unique qualities, such as his kindness, determination, and the wisdom he offered about social norms and communication.
What is the significance of the term 'neurodiversity' in the narrator's story?
-The term 'neurodiversity' signifies the recognition and appreciation of neurological differences, such as autism, as natural variations with distinctive strengths, rather than deficits.
What lesson did the narrator learn about advocating for his brother?
-The narrator learned not to take 'no' for an answer and to be persistent in advocating for his brother's needs, even when faced with bureaucratic obstacles.
How did the narrator's experiences abroad influence his views on education and family?
-The narrator's experiences abroad led to personal growth and a newfound passion for education. He also gained a deeper appreciation for his family's struggles and his brother's unique qualities.
What message does the narrator convey about embracing differences?
-The narrator encourages embracing differences and letting go of the pursuit of 'normal', suggesting that the world is better when we acknowledge and value the diverse ways people use their brains.
Outlines
🐾 Childhood Wishes and the Arrival of Muffin
The speaker reminisces about their childhood desire for a pet dog, inspired by the comic character Snoopy. They read extensively about dogs and eventually convinced their parents to get a dog named Muffin. However, Muffin turned out to be a challenging pet, exhibiting undesirable behaviors. Despite this, the speaker reflects on the positive aspects Muffin brought to their family, particularly in relation to their autistic brother. Muffin's ability to track and protect the brother, who had a tendency to run away, is highlighted as a valuable and unexpected contribution to the family.
🌟 Challenging Perceptions of Special Education
The speaker addresses the negative connotations associated with special education and the language used to describe it. They argue against the common discourse that implies pity or martyrdom in educating children with special needs. The speaker suggests that educators and parents should view their roles as empowering and normal, rather than as extraordinary acts. They also discuss societal stigmas around disability and the rarity of encounters with differently-abled individuals, using personal experiences to illustrate the challenges faced by their autistic brother as he grew older and less 'cute' to society's eyes.
🌍 Personal Growth and the Impact of Travel
The speaker shares their journey of self-discovery through global work and travel, which led to personal growth and a better understanding of themselves. They met their future wife, became a citizen of another country, and started a family. This period of their life was marked by significant positive changes, including a newfound passion for teaching and pedagogy. The speaker also reflects on the guilt of leaving their family during a challenging time but recognizes the necessity of self-improvement for being able to support others effectively.
❄️ Returning Home and Facing New Challenges
Upon returning to Toronto, the speaker faces a stark contrast to their life abroad, with the harsh winter and the difficult state of their family's health and finances. Their brother, who was once a source of joy, had become unrecognizable—physically large, angry, and unstable. The speaker grapples with the reality of their brother's changed behavior and the emotional turmoil it causes. They also describe the demoralizing process of navigating the complex disability support system, learning to be persistent and proactive in seeking help and resources.
🌈 Embracing Neurodiversity and Redefining 'Normal'
The speaker advocates for a shift in perspective towards neurodiversity, appreciating the unique strengths and contributions of individuals like their brother. They encourage letting go of the pursuit of 'normal' and embracing the diverse ways people use their brains. The speaker shares lessons learned from their brother about kindness, determination, and the importance of reciprocal communication. They conclude by expressing gratitude for how their brother has enriched their life as an educator, father, and husband, and for the audience's attention to their story.
Mindmap
Keywords
💡Neurodiversity
💡Pervasive Developmental Disorder
💡Autism
💡Special Education
💡Stigma
💡Neurotypical
💡Inequity
💡Embracing Differences
💡Support System
💡Self-Advocacy
💡Personal Growth
Highlights
The narrator's childhood dream of having a pet dog like Snoopy from the Peanuts comic books.
The family's acquisition of a pet dog named Muffin, who turned out to be quite unruly.
Muffin's unexpected role as a guardian, helping to keep the narrator's autistic brother safe.
The challenges faced by the family due to the narrator's brother's pervasive developmental disorder.
The cultural and socioeconomic background of the family, immigrating from pre-Samsung South Korea.
The narrator's personal struggle with his brother's condition and the desire for 'normalcy'.
The narrator's journey of self-discovery through global work and travel.
The realization of the importance of not waiting for someone with special needs to become 'normal'.
The stigma and lack of encounters with differently-abled individuals in society.
The narrator's experience as a special educator and the impact on his perspective of special education.
The importance of language and narrative in shaping perceptions of disability.
The narrator's return to Toronto to support his family during a time of crisis.
The difficulties faced by the family in navigating the disability support system.
The narrator's brother's transformation and the emotional impact on the family.
The concept of neurodiversity and its significance in understanding and accepting different cognitive variations.
The narrator's personal growth and the lessons learned from his brother about kindness, determination, and communication.
The call to action for embracing diversity and letting go of the pursuit of 'normal'.
Transcripts
when I was in elementary school I badly
wanted a pet dog like many kids I dreamt
of having a hyper intellectual canine
like Snoopy whenever I read those
peanuts comic books I went to the
library and read every book that I could
find about dogs from cover to cover like
many children have done over generations
I used every persuasive tactic I could
think of to try and get my parents to
get me that dog pretty soon my request
devolved into embarrassing tantrums but
guess what it worked one day we went to
PJ's pet store in the mall and got
ourself a little white fluffy dog we
christened her muffin
muffin was a terrible dog she would bite
people on a whim Yap like a horrible
electronic wind-up toy and treat our
entire home as her own personal toilet
it seemed like a big mistake to get
muffin the truth is though that muffin
was not the problem
it was us who was incompetent completely
unprepared to take care of a dog in fact
we had so much to be thankful for in her
you see my brother he's always been
differently abled he's been diagnosed as
having pervasive developmental disorder
by a doctor that perhaps hasn't
read any psychiatric literature in
decades and then finally autistic my
mother and father had a hard time with
them as you can imagine when you have a
child with a disability it's hard at the
best of times but when that challenge
intersects with all manner of
under-privileged you can feel hopeless
at the best of times or just numb at the
worst my parents grew up in pre Samsung
South Korea
and
they they both stopped going to school
sometime before puberty and they came to
this land like millions of others to try
and find a better life for their
children to find that American or
Canadian dream to this day even after
living in Toronto for over four decades
my mom speaks English with great if not
charming difficulty and I don't see my
dad much because he has issues of his
own which are starkly similar to my
brothers when he was young by far the
most difficult thing about living with
him was that he was a runner if there
was a crack in the door he was off with
the speed of light a little hint of
daylight like road runner an open road
or a sidewalk like Forrest Gump in race
mode that's where muffin comes in she
was like a superhero any time he took
off
usually unbeknownst to us she would be
after him like a homing missile I want
you to visualize a chubby little Asian
boy in various states of dress running
past the window of your house as you're
having a cup of tea and I can see that
you are appreciating that both the
hilarity and also the tragedy of that
but what was great about Martin was that
she would be relentless in trying to
grab a vice grip on the butt of his
pants to drag him home
it wasn't an Instagram era so I don't
have many photos and video loved it
well this is the best I can do
it actually looked a lot like that but
my talk today is not about dogs and how
wonderful they are even though they are
I want to talk to you today about people
and how marvelously weird they are I'm
gonna talk to you today about things all
of you can relate to growing up in a
bizarre family teaching strange children
and why the adjectives I'm using right
now should be considered strengths and
positives that we can recognize and
leverage rather than to stamp out and
fix I want to talk to you today about
how much better the world is when we let
go of our inequitable and fruitless
pursuit of normal and instead embrace
the many different ways that people use
their brains so let's start with this
thing we call special education if
you're an educator in the audience I ask
you how many times you've heard uttered
or thought this phrase before
don't worry you don't have to feel
guilty I know even as a special educator
myself I've said it or thought it many
times it's such a common discourse in
education that we are rarely admonished
for it but to elucidate how destructive
this sort of narrative might be let's
compare it to other instances where we
use this mentality
you've probably my apologies to
Nickelback fans out there don't worry
we've all enjoyed a Nickelback song come
on let's face it and how about these
terms I know they seem far less
offensive but I feel that sometimes
implicit meaning can be more sinister
than explicit ones when we say I don't
know how you do it or she's a saint
we don't seem to mean it exactly in the
same manner in which we say it to an
olympic swimmer or somebody who works as
an emergency room surgeon educators and
parents of kids with special needs don't
need a discourse around their work which
posits pity as praise or depicts
everything they do as either an act of
martyrdom or an act of dropping out of
that martyrdom when we say how do you
even deal with that it seems like we are
suggesting that working with some of the
most marginalized people in our society
is inherently an undesirable task
shouldn't we all just consider ourselves
educators and even parents of kids with
special complex diverse needs instead of
just leaving it to a small cadre of
noble individuals going that extra mile
of course this narrative is only
reflective of the greater society in
which we live
everywhere we go we inflame the stigma
around being differently abled for
instance going by numbers such as these
you would think that your encounters
with people that were different or
special would be fairly common not that
it's always visible of course but I ask
you how many times do you feel like you
have these encounters with people like
my brother at work
in your office walking the dog or
waiting in line for your skinny cinnamon
Dolce latte let me connect this back to
my own experience again of being a
brother of an autistic it was as he was
reaching the later years of elementary
school that my brother started to become
someone we didn't necessarily want to
showcase out in the world before that
when he was younger running through the
streets with a foot white fluffy dog on
his tail it was like people gave him a
pass for being a little too jovial
strange and a bit quirky as he became
older and not as cute it's like his
personality became more of a behavior
problem with regret deep in my heart I
remember thinking to myself why can't my
brother be normal the little boy that I
used to cuddle and wrestle with who I
used to sing songs with now felt a bit
more like a burden I always used to
wonder these things and it was around
that time perhaps not coincidentally
that I was having my own existential
crises deciding that global work and
travel would be my only way out of these
troubles although there's a part of me
that feels guilty for leaving my family
at a time when they needed me most I
realize in retrospect that it was the
best thing for everyone involved
the old adage which states that you
can't help someone unless you help your
own self
really rings true for me here there was
no way that I was going to be able to
support anybody if I didn't sort out my
own ship
so my adventure is working and traveling
abroad culminated and some great things
meeting the woman of my dreams becoming
a citizen of a different country in both
the literal and metaphorical sense and
starting my own family I was one of
those it's a cliche to say this but who
truly found themselves traveling the
world the growth I experienced and my
self-awareness and efficacy was
exponential to use the most understated
term I just became a significantly
better version of myself and one of the
ways I did that was by putting myself
out there sharing my stories being as
open as I could even though even when it
resulted in negative situations that
allowed serendipity to really help my
life I had no idea for instance that I
would end up a teacher with a passion
for pedagogy and connected so deeply to
my own personal experience I didn't know
that my first teaching job would have a
boy in the class with almost the exact
same learner profile as my brother so
many weird things like this happen so
six years passed while I was overseas
and things were not well with my family
their health and finances were in a
risky State and my brother was ending
his run with public schooling an ominous
time for many families which with the
child with complex needs strangely in
contrast I was thriving overseas I was
honored to receive academic scholarship
to pursue my studies in critical
pedagogy so a newfound passion of mine
at the time I'd become a family of my
own as I stayed it
my wife and I had created a most
beautiful creature she was most
certainly the apple of my eye if not a
bruised one as she was very difficult to
care for very very colicky
but our challenges as first-time young
incompetent parents were nothing
compared to what was going on in my
first home of the great white north
every time I called home I would feel
pangs of regret electrocuting me through
the phone line for now my great life
overseas had to be put on hold my loving
wife agreed to come support me and
coming back home to Toronto from the
moment we stepped off the plane from the
height of southern hemisphere tropical
summer to the depths of Toronto in
January things got very difficult it was
winter and as they say we were
discontented my brother was
unrecognizable to me he was physically
massive angry and unstable the boy with
the light beaming out of his eyes that I
knew as a child was replaced with a
thousand-yard almost lobotomized stare I
was always the one who could make my
brother happy by singing him the theme
song from sonic hedgehog video game or
talking about the Toronto Blue Jays but
now he acted like I was a stranger to
him I'll never forget the day when he
ran up to my one-year-old daughter and
pushed her to the ground
utterly perturbed by something only he
himself could understand I remember
having to get physical with them and
wondering to myself am I gonna have to
fight my brother today
I have to fight him everyday being so
stunned and angered by this incident I
just didn't know what to do I felt
helpless I was searching everything that
I could under Google with the terms
Ontario disability supports funding the
process was like trying to herd puppies
in a snowstorm I was going from one
voicemail to another completely unaware
of what the best strategy was I would
talk to one person they would tell me to
go to that person that person will tell
me to go to another organisation and
then I'd end up after several other
moments of passing the buck talking to
the same person I started with it was
and often still is very demoralizing but
that's when I learned the first lesson
of supporting and caring for somebody
with with special and complex needs
don't take no for an answer
I learned that if somebody says oh yes
we will get back to you then I'd have to
call back the very next day and stop
listening to that part of our brain that
tells us oh you might be annoying or you
might be rude if I if somebody said
they've got to get back to me in a week
I would call back them back the very
next day I also learned something else I
had to stop feeling sorry for myself I
had to stop waiting for the day when my
brother would be normal I had to stop
waiting for him to be fixed like a car
that wouldn't start I had to stop
wishing that he would come out with me
and have a beer and talk about things
men are supposed to talk about basically
I stopped wishing he would become
something
was not I realized that my brother has
so much to offer the world
I realized that he was so kind and that
he only knew how to be kind I realized
that it was just that he was flummoxed
as to how to get love reciprocated I
realized how determined he was in stoic
and greedy as they say and that he never
thought selfish attention like many of
us do you I also realized that when he
understands the context when you can
figure out what is going on around him
that he's more dependable reliable than
many people that you know and I started
to appreciate how much strength and
wisdom my brother was sharing with me
he's my constant reminder that social
norms that we have in the world are just
that socially constructed concepts that
vary from context to context and evolve
over time he's also there to remind me
that the world even though we've made so
much progress is still an inequitable
place it's still exclusive my brother
also reminds me that communication isn't
something that happens just because you
tell someone something or you email them
a message or write it in a memo it's
when messages are sent and received and
reciprocated
he's also taught me so much to explore
this great new concept and movement
called neurodiversity
as Steve Silberman states in his mind
opening book neuro tribes conditions
like autism dyslexia and intention
deficit hyperactive hyperactivity
disorder should be regarded as naturally
occurring cognitive variations with
distinctive strengths that have
contributed to the evolution of
Technology and culture rather than a
checklist of deficits and dysfunctions
so I want you to think of people like my
brother that you know and Rhea and try
and go a place where I am now where I
appreciate weird much more over normal
i've disavowed my pursuit of it because
when we try and hold that concept in our
hands like so many granules of sand it's
so much more liberating to just let that
stand go and trust me the beach is much
more beautiful when you do so I'm so
thankful to my brother for making me a
better educator and a better dad and
husband
my main vocations in life and I'm
thankful to all of you for listening to
my story today thank you
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